Two years ago, we were ending our second week in Boston at the children's hospital. It was also when we received the news: Dan had Niemann-Pick Type C.
I think at the time we were the only ones who truly understood what that meant. By the end of the weekend, the doctors and the nurses had started to learn about the disease.
I spent most of that first weekend online doing research and learning about options. I met some wonderful people online and still have only met a few of them in person.
In the years since, the amount of information available to families has grown and more families are now online and connecting. It is amazing how families step up and are willing to share information and help each other.
Yes, there is still no cure. But there are treatments that are promising - not just in prolonging life but in prolonging a quality of life.
Niemann-Pick is still a rare disease and as a rare disease doesn't get the recognition like other diseases. Please take a minute and think about all the families who have rare diseases. If you can help them, in any way, please do so.
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I echo and support your sentiments so fully, Jill. I have only a threadlike connection to rare disease in our family - the cousin of a nephew's wife - people we have never met. In fact, I have never met any of the NPD or SanFilippo families whose blogs I follow. Yet I feel each family is part of my own and my awareness of rare disease and the challenges families face in battling them has gone from non-existent to part of my everyday life. My fondest wish is seeing some of those promising treatments come to fruition soon.
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